Generalizability and longitudinal outcomes of a national heart failure clinical registry: Comparison of Acute Decompensated Heart Failure National Registry (ADHERE) and non-ADHERE Medicare beneficiaries

Am Heart J. 2010 Nov;160(5):885-92. doi: 10.1016/j.ahj.2010.07.020.

Abstract

Background: Clinical registries are used increasingly to analyze quality and outcomes, but the generalizability of findings from registries is unclear.

Methods: We linked data from the Acute Decompensated Heart Failure National Registry (ADHERE) to 100% fee-for-service Medicare claims data. We compared patient characteristics and inpatient mortality of linked and unlinked ADHERE hospitalizations; patient characteristics, readmission, and postdischarge mortality of linked ADHERE patients to a random 20% sample of Medicare beneficiaries hospitalized for heart failure; and characteristics of Medicare sites participating and not participating in ADHERE.

Results: Among 135,667 ADHERE records for eligible patients ≥ 65 years, we matched 104,808 (77.3%) records to fee-for-service Medicare claims, representing 82,074 patients. Linked hospitalizations were more likely than unlinked hospitalizations to involve women and white patients; there were no meaningful differences in other patient characteristics. In-hospital mortality was identical for linked and unlinked hospitalizations. In Medicare, ADHERE patients had slightly lower unadjusted mortality (4.4% vs 4.9% in-hospital, 11.2% vs 12.2% at 30 days, 36.0% vs 38.3% at 1 year [P < .001]) and all-cause readmission (22.1% vs 23.7% at 30 days, 65.8% vs 67.9% at 1 year [P < .001]). After risk adjustment, modest but statistically significant differences remained. ADHERE hospitals were more likely than non-ADHERE hospitals to be teaching hospitals, have higher volumes of heart failure discharges, and offer advanced cardiac services.

Conclusion: Elderly patients in ADHERE are similar to Medicare beneficiaries hospitalized with heart failure. Differences related to selective enrollment in ADHERE hospitals and self-selection of participating hospitals are modest.

Trial registration: ClinicalTrials.gov NCT00366639.

Publication types

  • Comparative Study
  • Multicenter Study
  • Randomized Controlled Trial

MeSH terms

  • Acute Disease
  • Aged
  • Aged, 80 and over
  • Fee-for-Service Plans / economics*
  • Female
  • Follow-Up Studies
  • Heart Failure / economics
  • Heart Failure / epidemiology
  • Heart Failure / therapy*
  • Hospital Mortality / trends
  • Hospitalization / economics*
  • Humans
  • Male
  • Medicare / economics*
  • Quality of Health Care*
  • Registries*
  • Retrospective Studies
  • United States / epidemiology

Associated data

  • ClinicalTrials.gov/NCT00366639